INDIVIDUAL EXPERIENCES

Mussa Haji Mussa, Self Advocate from Zanzibar

Mussa Haji SA ZanzibarMy name is Mussa Haji Mussa, Self Advocate and am 19 years of old. I live in Zanzibar at a place called Midai. I come from a family of eight; father, mother, three sisters and two brothers. I still live with my parents. I am not stopped to do what I want to do by anyone, I am a free man. I very much love my mother and my father. But my mother is too much concern about me. Sometime I do not like it. She wants to watch over me most of the time.

I have many friends. My friends like football and I also do. I meet my friends in town or in places such as this workshop.

My education background: I only went up to Class 4 (Primary level). I would have loved to have continued with my education, but I could not make it. At the moment I am not in any formal kind of employment. A lot of people like me in the community and sometimes they support me financially

My immediate plans is to get married. I have a fiancé already. She lives Ngombe area and if facilitators had enough time I would have taken you to my lovely fiancé. In my planning process, I wish to involve the Zanzibar Association of Persons with Developmental Disabilities (ZAPDD) members to help me achieve my goal.

However, it has not been easy to convince my parents that I should get married again. Last time I got married but wife died mysteriously. Nevertheless, my fiancé and I resolved that we should go ahead and get married and our stand has been communicated to families from either side.

My ambition is to work for local Bank here in Zanzibar in order to sustain my family. Once I start working and be able to support my family, then I will say I am an Independent. If that plan fails, I intend to become a powerful Politician. I intend to stand as a Member of Parliament in the Constituency”.

At this point, Musa was given an opportunity to role play to the participants on how he was going to convince the people in the constituency that he was the right candidate, if given chance to stand. Musa spoke like a full flagged politician, holding his hand on the table and facing the listeners with a lot of authority.

 If you make me your area MP, I will see to it that our community is from if free from all forms of Discrimination and create a community that will be included, and no one among self advocates should be allowed to live in an Institution”. Then he lifted his hands up and waved to the participants and thanked them for listening to his speech, like a real politician.

Musa says the only major challenge is that he has seen many of his friends being discriminated again in our communities and asked for an end to such practices.

Daltonee Misiko, Self-Advocate from Kenya

Daltone SA KENYADaltone is a 35year old man living with intellectual disability, his disability was discovered at the age of 5 years when teachers told his mother that he needed to be in a special school and not in “normal school”. Daltone has always dreamed of a normal life where he lives just as everyone else does, but this has been a difficult dream to actualize because ever since the discovery of his intellectual disability he has gone through a lot of discrimination and oppression.

Daltone joined the Kenya Association of the Intellectually Handicapped (KAIH) in 2005 and has been an active member since then. In 2012 KAIH started a project of obtaining necessary documents for self advocates after realizing that only a few self advocates had Birth Certificates, Identity cards, and so on. These are very important documents for any citizen to have but people with intellectual disabilities don’t have them simply because their families don’t feel the need to get them these documents even though they are vital in getting a job or leaving the country or just for the mere feeling of being an adult and to be do certain things by yourself like opening a bank account, depositing money in it and so on.

Daltone had a birth certificate but did not have an identity card and so we started the process of obtaining one for him. We went to our local District Officer’s office in Kayole Nairobi, we were told to produce his birth certificate so that the process could start. The first challenge we encountered was the way in which the officials addressed Daltone and other self advocates. Daltone’s disability is not visible so they ordered him and the others to write up for themselves and “stop pretending that they are retarded”. At this point I triesd to sensitize them what intellectual disability.They would have none of it. They instructed Daltone and the rest to write on their own forms thinking we are lying. At that point I told the self advocates to themsleves inform the officials of their disability and why they need support persons. The officials finally agreed but the manner in which they were addressing the self advocates was not good, they were shouting orders at Daltone and this confused him to the point that he did not understand what we were doing there. He was ordered to put his finger print on a paper but his fingers were stiff due to being scared I had to talk him through what the official was saying even though she was speaking Swahili language which he understands.

Due to the confusion, he messed up his paper and the official was furious she started asking what is wrong with him and that those papers are not to be wasted, even after explanation she simply kept asking me why I brought such a lot to them. After that we had to go where Daltonee was to be photographed for his ID this was yet another ordeal since the official was barking orders and this confused Daltonee to the in that he could not get the orders his posture was off and he kept on looking at me for help since he felt like he was doing everything all wrong. After again explaining intellectual disability to the official he would have none of it, he told Daltone that he is a man and should stop acting like a sissy and stand up straight for his picture to be taken. Needless to say by the time we had finished with the district office and given his voting card which he would produce after three months when he went back to collect his ID, we were exhausted we had used up our energy explaining ourselves over and over again.

Then came the time for Daltone to vote in the General Elections after he had picked his Identity Card, this was a bit easier since the government had put aside a separate queue for Persons with Disability to vote in but Daltone does not look like he has a disability and so they refused for him to join the line since they thought he was faking it. He did not have a card that identifies him as a person with a disability this is because many families here in Kenya do not see the need for such things as they do not know the benefits of having them. In this case he had to stand in line for hours waiting for his turn. As anyone who is conversant with intellectual disability knows standing for a long time with no food or drink and while being idle makes a self advocate less attentive and so his enthusiasm diminished, when it was his turn to vote he had his sister there to help him choose which candidate he wanted.

This is just one of the many stories in which our self advocates have to go through discrimination and oppressing just because they have a disability that the majority of the public and especially officials in the government that is supposed to serve them do not understand. And in this case many self advocates and their families give up looking for vital documents for them because it seems like too much of a hurdle and others decide they won’t even try because they do not want to go through the humiliation. Getting important documents for self advocates in my experience has been quite challenging and the number of times I have had to explain intellectual disability to the same officials has been daunting. We keep on doing awareness programs, but the challenge is still there.

  • Story written by Fayel Achieng, Self-Advocacy Program Officer, KAIH